cripchick’s weblog

This is something I have been writing for school. It’s still in the works but I wanted to post after a conversation I had with two friends about March being the time when all the Jerry Lewis MDA-telethon lovers come out to play (and ask you to donate money for our wretched souls.)

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You’re so courageous. Brave. An inspiration. God bless you.
Can I buy you an ice cream cone?
Carry your bag [even though you show no sign of being ready to move?]

This is in the Atlanta airport. I am traveling to Memphis so that I can meet friends, hopefully write some poetry, and go to the Civil Rights Museum if everyone’s up to it. I am traveling with my personal care attendant [PCA], Em, and when she goes to check out some shops, I pick up my book and try to relax until the delayed flight finally arrives.

Except that I can’t relax—privacy is a privilege I don’t have. My body is different. My spine twists and turns in ways unimaginable to the everyday airport passerby. I breathe and talk differently. It’s understandable that people are curious but when people are constantly pulling over to where I’m sitting and telling me things like they can’t imagine living like I do, that I’m an “inspiration”, it’s no longer a mere curiosity about my body. It’s a strong statement on what disability means in this society. It’s the lens in which people view those who are physically “otherized.” It’s the Ashley X treatment and disabled women being sterilized and stunted to convenience [make things easier] their poor caregivers. It’s the high unemployment rate (sometimes estimated at 70%) for disabled people because Jerry Lewis tells them we’re charity cases, not contributors. And it does not matter if I am on vacation visiting loved ones, traveling to speak at a disability rights conference, or working on Capitol Hill, they will still refuse to believe that I wanted to get out of bed in the morning. To them, I am nothing but a modern Tiny Tim whose head seems to need some urgent head-patting.

I could go into my speech about how in the words of St. Augustine, charity is no substitute for justice withheld. I could tell them that I love this disabled body they deem freakish or that I wouldn’t trade the community I share with people who speak, think, visualize or move differently for anything in the world (this is the same bond that Dr. Carol Gill defines as the familiar, comfortable rhythm of shared meanings that Disabled people, even strangers, fall into when they meet.) I could tell them that I’m just like everyone else.

Just. Like. Everyone. Else. Except that particular statement never works. When people hear disabled people say that, they assume that we want to be able-bodied or that we want to somehow separate ourselves from disability. I am proud to be who I am and am not sure how this is message is confused with the wish to be treated equally, or just like everyone else. You will not hear me claim that disability does not define me, in fact, it is an integral part of who I am. Is identity not inherently connected to one’s experiences or how one is perceived?

This is not to say life is not a struggle when one does not fit into dominant culture. My life is one of resisting assimilation [being absorbed into another culture]and struggling to find pride in who I am. Assimilation comes in many forms. Sometimes it is subtle, like temporarily wishing I could take off the disabled/queer/Corean hat and just be a college student. Sometimes it’s more explicit, like the year I spent immersed in only country music and cowboy boots or whenever I choose advocacy over activism because I am buying into the messages that says it is the only way to do something.

Mia Mingus, a fellow queer disabled APIA activist, says that multi-issue politics are not just a winning strategy but indeed the only way that we will survive. Pat Parker, a black lesbian feminist writer, said that the day that all the different parts of her can come along, we would have what she would call a revolution. There is truth in the words of these two women and as I continue to shed preconceived ideas of what it means to be me, I will continue to seek this truth.

And until we meet again, beware of wishing a Chicken-Soup-For-the-Soulish God Bless you on any uppity cripples you run across in an airport.

CHECK OUT THE BLOGSWARM OVER AT KARA’S!!!!!!(not too late to join, just email your link to consciouslycrip@gmail.com)

I didn’t think I was going to blog about the telethon, only because I’ve been up to my eyebrows in telethon-related organizing and with the campaign being posted tonight at midnight, I thought my position it was clear.

I have Muscular Dystrophy, but like NO explains on Think Freestyle I believe disability is a cultural identity and don’t feel the need to label myself with a medical diagnosis. Muscular dystrophy/congenital myopathy/or whatever the doctors are arguing “it” is, these aren’t words I use to describe myself, rather they belong to my doctors and the medical establisment [field or structure]. 

I’ve been reading Accidents by Nature, a book for younger teens written by Harriet Mcbryde Johnson, a woman who has been protesting the telethon for 17 years. The main character is one many disabled people can identify with as she grew up mainstreamed and separated herself from disability because society taught her that it was disabling unless she “rose above” when actually disability is just a natural, beautiful, complex part of the human experience. I don’t know if it’s because the book is set in NC and I recognize all the names, but it’s like I’m reading my own story. I haven’t reached the end of the book yet but I believe she will understand she is like the other disabled kids and learn to be proud of that, rather than trying to deny, hate, heal, erase, or “overcome” her disability.

I remember the moment I learned I even had a community. (more…)

“The very human desire for cures . . . can never justify a television show that reinforces a stigma against disabled people.” –Evan J Kemp

Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual Telethon, a telethon that occurs every Labor Day to raise funds for cures by using disabled people as posterchildren. Disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us.

What can we do? Protest. Write a Letter to the Editor. Tell people about the charity, medical, and social model of disability. Blog. Kara and I, along with the Disability Activist Collective (website coming soon) are organizing a campaign against the telethon and the charity model of disability. We need bloggers (not only disability bloggers but all! feminist, queer, woc, environmentalist, activists, great time to build alliances) who will agree to write about this! The campaign will work much like a blog carnival and will be heavily publicized in listservs and other sources of media. We encourage you to participate! To participate, please a comment or email us a consciouslycrip@gmail.com We will be announcing the campaign on Thursday via media and will tell them to check the website postings on Monday. The campaign will be posted on Kara’s site.

Here are more links you can check out to find out more:

• “When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.” –Jerry Lewis on what disability must be like.
• “People with disabilities are proud citizens, not objects of pity! We will not stay in our houses. We will protest the Jerry Lewis Telethon this Labor Day!” —cripcommentary.com
• The Kids Are Alright!
• “Pity? [If] you don’t want to be pitied because you’re a cripple in a wheelchair, stay in ya house!”—Jerry Lewis

A template letter the Disability Activist Collective wrote for you to use:

To the editor,

We write in protest of the Muscular Dystrophy Association (MDA)’s Labor Day telethon. The telethon is based off of the ableist idea [discrimination shown by favoring people who are not disabled] that people with disabilities are tragic victims. The disability community refers to this as the charity model of disability because it categorizes disabled people as nothing more than the objects of pity.. As people with disabilities, we do not need pity. We want and deserve equal access to public space and services and respect as fully participating members of society.

Many non-disabled people believe that exploiting people with disabilities on TV (through actions such as this telethon) is okay, as long as the funds go to “helping” to find a “cure.” We want the world to hear directly from us. We want the world to know that no amount of money can make pity and discrimination okay. Our society would not promote a cure for gender or race; why is disability any different? We fight for disability to be viewed as a natural part of life and not as something that needs to be changed.

With disability pride!!

Disability Activist Collective